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Ethical issues and practical barriers in internet-based suicide prevention research: a review and investigator survey.

ABSTRACT: BACKGROUND:People who are at elevated risk of suicide stand to benefit from internet-based interventions; however, research in this area is likely impacted by a range of ethical and practical challenges. The aim of this study was to examine the ethical issues and practical barriers associated with clinical studies of internet-based interventions for suicide prevention. METHOD:This was a mixed-methods study involving two phases. First, a systematic search was conducted to identify studies evaluating internet-based interventions for people at risk of suicide, and information pertaining to safety protocols and exclusion criteria was extracted. Second, investigators on the included studies were invited to complete an online survey comprising open-ended and forced-choice responses. Quantitative and qualitative methods were used to analyse the data. RESULTS:The literature search identified 18 eligible studies, of which three excluded participants based on severity of suicide risk. Half of the 15 suicide researchers who participated in the survey had experienced problems obtaining ethics approval, and none had encountered adverse events attributed to their intervention. Survey respondents noted the difficulty of managing risk in online environments and the limitations associated with implementing safety protocols, although some also reported increased confidence resulting from the ethical review process. Respondents recommended researchers pursue a collaborative relationship with their research ethics committees. CONCLUSION:There is a balance to be achieved between the need to minimise the risk of adverse events whilst also ensuring interventions are being validated on populations who may be most likely to use and benefit from them (i.e., those who prefer anonymity). Further research is required to obtain the views of research ethics committees and research participants on these issues. Dialogue between researchers and ethics committees is necessary to address the need to ensure safety while also advancing the timely development of effective interventions in this critical area.

SUBMITTER: Bailey E

PROVIDER: S-EPMC7222514 | biostudies-literature | 2020 May

REPOSITORIES: biostudies-literature

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Ethical issues and practical barriers in internet-based suicide prevention research: a review and investigator survey.

Bailey Eleanor E Mühlmann Charlotte C Rice Simon S Nedeljkovic Maja M Alvarez-Jimenez Mario M Sander Lasse L Calear Alison L AL Batterham Philip J PJ Robinson Jo J

BMC medical ethics 20200513 1

<h4>Background</h4>People who are at elevated risk of suicide stand to benefit from internet-based interventions; however, research in this area is likely impacted by a range of ethical and practical challenges. The aim of this study was to examine the ethical issues and practical barriers associated with clinical studies of internet-based interventions for suicide prevention.<h4>Method</h4>This was a mixed-methods study involving two phases. First, a systematic search was conducted to identify ...[more]

PMID: 32404098

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Project description:BackgroundThe internet is an increasingly popular tool in family and child research that is argued to pose new ethical challenges, yet few studies have systematically assessed the ethical issues of engaging parents and children in research online. This scoping review aims to identify and integrate evidence on the ethical issues reported when recruiting, retaining and tracing families and children in research online, and to identify ethical guidelines for internet research.MethodsAcademic literature was searched using electronic academic databases (Scopus, PsycINFO, Embase, ERIC, CINAHL and Informit) and handsearching reference lists for articles published in English between January 2006 and February 2016. Grey literature was searched using Google to identify relevant ethical guidelines.ResultsSixty-five academic articles were included after screening 3,537 titles and abstracts and 205 full-text articles. Most articles reported using the internet to recruit participants (88%) with few reporting online retention (12%) or tracing (10%). Forty percent commented on ethical issues; the majority did not discuss ethics beyond general consent or approval procedures. Some ethical concerns were specific to engaging minors online, including parental consent, age verification and children's vulnerability. Other concerns applied when engaging any research participant online, including privacy and confidentiality, informed consent and disparities in internet access. Five professional guidelines and 10 university guidelines on internet research ethics were identified. Few academic articles (5%) reported using these guidelines.ConclusionsEngaging families and children in research online introduces unique challenges requiring careful consideration. While researchers regarded themselves as responsible for ensuring research is conducted ethically, lack of use of available guidelines and limited academic literature suggests internet research is occurring without suitable guidance. We recommend broad dissemination of ethical guidelines and encourage researchers to report the methodological and ethical issues of using the internet to engage families and children in research.

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Dataset Information

Ethical issues and practical barriers in internet-based suicide prevention research: a review and investigator survey.

Publications

Ethical issues and practical barriers in internet-based suicide prevention research: a review and investigator survey.

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